Magical Boog and Me

It is an odd experience being the mother to a kid with special needs. You have the schedules and the therapies and the doctor appointments and the constant explaining, "This is Rylan, he probably won't say 'Hi' back to you, he's autistic", and the accepting and kindly brushing off of sympathies from people who just don't get how awesome it is to be the Boog's mother...

...and then you have these quiet moments at home when no one else is watching when you become aware that no matter how on top of things you are out in that world of doctors and therapists and other parents, you really have no clue at all what you're doing and no idea of how to properly manage this magical being you've been entrusted with.

I really do think of the Boog as a magical being. Some, perhaps lesser educated, people might think of a person with special needs as being less than a whole person, as if their emotions and thoughts were somehow smaller because of the labels we've put on them. I have no doubt at all that the Boog is a whole person, I just don't have access to most of him. It's like loving someone you only see in your dreams. Half the time I spend with him, it seems to me that he's some place else entirely.

I have, on occasion, described raising the Boog as raising a large, extremely advanced baby, mainly because he's non-verbal and I mostly have to guess at his needs and desires, but this is both a disservice to the incredibly bright and whole person he is and inaccurate. It's really more like raising a fairy or a merperson or something. I have said that it's like trying to communicate with someone who speaks a different language, but it goes deeper than that. We not only don't understand each other's languages, we don't understand the very methods we use to try to communicate with each other.

I also occasionally think, usually after a particularly grueling therapy session, well how dare we insist that he live in our world, speak our language, appreciate our things when he has his own very rich inner world that he lives in? The trouble is, though, that he has to live in our world. I can't live in his. He has to at least try to learn to talk, read, write, add and subtract, go to school, graduate, get a job, get married, etc., etc., etc., because there's nothing else to do.

So there are times when I sit and watch him quietly watching the gold-colored doorknob for half an hour and I have no idea at all what he's thinking and no connection is possible. Then, there are times like tonight when, after taking a header onto the concrete earlier because he was too mesmerized by his monkey block to watch his feet, he needs a little human contact. He was crying in his bed and I went to him and picked him up and put him on my lap and rocked with him and sang his lullaby. Instead of pushing me away with stiff arms, he laid his little head on my chest and wrapped his arms around me and when the song was over, he looked up in my face and whined and put his hand on my mouth to let me know he wanted me to sing it again, and I did - three more times.

Then I put him back to bed and I cried, because it is so hard and so wonderful to be his mother.